Second week of school...success!

The second week of school is done! Both boys have been doing great. Sammy has been dutifully picking up litter in his classroom, just as he does everywhere we go. :) Elijah has been continuing to show maturity this week, which is in my opinion in HUGE part to meds. Being used to the way things were last year, I find that I brace myself in certain situations only to find that I can relax. Example: homework! He and I have sat down three times together so far this school year and completed BIG math sheets with at most one mild complaint. Last year there would have been 50 complaints and he would have scribbled over and eventually crumpled up the paper. As was the case during the summer, his threshold seems to be so much bigger. He can handle a full day of school and therapy and homework and not be totally overwhelmed. PRAYING this continues!

I took E to see Dr. M (developmental ped) this week and he was happy to hear how Elijah was responding to the meds. He told me that just observing him in the office he seemed calmer and less distracted. We are going to try a VERY tiny dosage increase in a few weeks. We are also continuing with talk/skills therapy and Dr. M was on board with everything we are doing. We are also having someone come to our home on Monday to do an assessment for in-home skills/behavioral therapy. I'm feeling super hopeful about this because so much of what Elijah needs assistance with occurs in our home and typically in the late afternoon/evening. In addition to being his LUCKY mom, I am also his behavioral/social skills coach and it would be SO helpful to get some help with this!

And of course that's not all! :) Elijah's urethral surgery is scheduled for next Friday, but Dr. R asked that we have pre-op done a week in advance in order to get results from his urinalysis in time. Today I got a call from his primary doctor with the news that Elijah's preliminary cultures showed that he has a UTI! Today we started him on a 10-day course of antibiotics and that likely will push surgery back by a bit (we'll know for sure on Monday).

It's always something, but I want to say that the constant "action" in our lives does not bring us down. Aside from HATING the pain and anxiety Elijah has to constantly endure, we do remember that THIS IS OUR JOURNEY (not just Elijah's, but OURS..we're always right there with him). It's useless to fight what God has in store for us. If we did, we'd be miserable!

I was able to spend a bit of time in Sammy's classroom this week and it was so much fun to see him in that setting. He is thriving and growing and doing so well. I am so proud of my sweet boy! He has been a bit more tired than usual, but he has eagerly gotten onto the bus every morning and hasn't complained about a thing. He adores his sweet teacher (she is the BEST!) and talks kindly about his new friends. He literally has not said a single negative thing about school.

Today we made our yearly trip to the corn maze as a family and we had so much fun! It was our warmest year to date. I of course have tons of photos to share. Next post! Thanks for reading!

Pulmonology and dev-ped check-ups

Yesterday Elijah had a check-up with his pulmonologist, who he still sees because of croup. We have always loved Dr. K. He is one of the best doctors we have ever gotten to know. I am constantly amazed at and so thankful for our incredible doctors. As always, Dr. K blew my socks off. He is incredibly smart, relatable and kind. He always makes us as parents feel valued, validated and respected. As I talked about E's croup in the past year, he kept saying, "Very interesting." When I finished talking, he explained what he found so interesting. First of all, it is "highly unusual" for an 8-year-old to get recurrent croup (of course!). He was intrigued that Sammy also gets it regularly and severely. Also, according to him, most parents never know when croup is coming and they live in constant fear. I almost always know when it's coming, and I give the boys oral steroids to prevent or lessen an episode. Dr. K was in agreement that giving meds preventatively is absolutely the right thing to do. As for E's croup, although he is perplexed, he feels we are doing everything we can at this point.

He asked about summer plans and I shared that the little boys and I will be road-tripping out east again this year. He thought that was just the coolest thing ever and promised that he would send me a few children's books on CD that his children once enjoyed. What doctor does that? He is the best!

I have to share another little tidbit about our visit.. I brought both boys to the appointment and as expected, they started to fight. Elijah tried to head butt Sammy and a few unsavory words came out of his mouth. Then Sammy was saying, "Mommy-Mommy-Mommy" repeatedly as I tried to talk to the doctor. Dr. K looked straight at Sammy and firmly said, "Excuse me!" then at Elijah and said, "Elijah, you need to chill a little bit, okay?" Both boys quieted. At first I was embarrassed and thought he must think I'm a horrible mother. After the appointment I realized he was trying to help me. He has children. He knows children. He saw me stressing while trying to focus, and he helped me out.

Today we visited with Dr. M, E's developmental ped...another top-notch doctor! Seriously, I cannot say enough good things about his team. Dr. M took tons of time with us. Learning from yesterday, I brought Sammy to daycare so I could FOCUS. Elijah did great! We did not have even a single issue during the entire appointment, which is a pretty rare thing these days. We discussed the past few months...how school ended on a mostly good note and how summer is beginning on a mostly sour note. He suggested another med to "take the edge off," but of course I'm hesitant to try it. Elijah is so sensitive to meds, but the prospect of that "edge" being rounded out a little bit is so enticing. Dan and I have some talking to do.

Dr. M is so good at building Elijah (and me!) up and making him feel proud of himself. He uncovered all of E's accomplishments in the past few months and made sure to give him huge props for everything. This is something I feel like I don't do enough. :( It is so easy to get caught up in the challenging times when we are in the trenches. Dr. M gave me a renewed perspective and I promised myself that I will DAILY tell Elijah how proud I am of him (Sammy, too). I am SO proud of my boys. Despite E's challenges, he is doing so incredibly well...and thriving! It is easy to forget about the hurdles he's jumped over to get to the point he is at now!

As I have been saying, the past few weeks have been challenging. I have been praying so hard for a breakthrough in ANY area. Last night at 3am, Elijah called me into his room, which is not unusual. What IS unusual is that he told me he had to go poop. So he did....IN THE TOILET. This is the first time he has ever done this in the middle of the night. He stayed clean for the entire rest of the night. Maybe our new "system" of taking toys away has been working?! We did a lot of talking about it today and I'm praying last night was a huge step in the right direction. I shared this accomplishment with Dr. M today and he was OVER THE MOON and hopeful about it.

I feel like we are doing EVERYTHING possible to help Elijah feel happier and more peaceful/rested. Please pray with us that we continue to make all of the right decisions!

That's all I have for tonight! Have a great evening!

Okoboji family reunion 2014 and a visit with the developmental ped

We are back from our 2014 Okoboji family adventure. It seems like our trip went by so quickly. Dan was able to be with us for the first few days, but then had to head back to work in the sky. The boys and I missed him terribly after he left. They said about a hundred times, "I MISS DADDY!" We had plenty of distraction, though, with tons of family surrounding us constantly. Elijah and Sammy have some older second cousins who lavish love upon them. We spent some time on my uncle's boat and Elijah particularly was in HEAVEN. Oh my goodness that boy loves to go fast. His arms were flapping a hundred miles a minute with a huge smile smeared on his face as he screamed, "GO FASTER! FAAAASTERRRR!" The boys also got some partial lake time. It was only partial because Elijah has not been cleared by ENT to swim yet (hopefully this will happen tomorrow). 

Dan had to leave before the bulk of the family arrived, so he missed out on family photos. :( We were able to capture a bunch of family shots, including this one of my dad/stepmom, older brother and us (minus Dan).

We had an incredible time, but it has felt so good to be at home. I don't think I've ever loved my home/bed so much!

Today we brought Elijah to see his developmental pediatrician, the incredible Dr. M. We chatted about a few key issues: Elijah's inability to prioritize bodily functions/needs, his lack of self-awareness, his anxiety and his lingering potty issues. Oh how I appreciate smart doctors. A few things that he said today struck a chord since these are thoughts/realizations I've had recently.

When we described E's impulsiveness and tendency to break down easily, he said something along these lines: Elijah requires so much energy and patience and control just to get through every day. Every little thing is either overwhelming or confusing for him, and that depletes his resources. So basically, he is at 211 degrees all the time. When the littlest thing happens, he reaches boiling point and explodes. To us it may seem like a minor issue, but for him it may be the thing that breaks him. I did a really good job of holding back tears as Dr. M spoke these words. It makes me feel so sad that Elijah is running on empty basically all the time, struggling with every little thing that comes his way. We've of course known all of this for some time, but it was somehow different hearing it from the doctor.

Dr. M also mentioned how Elijah's tendency to rely on facts is significant. It tells us that he feels out of control most of the time and clings to facts in order to feel secure. So much of his life feels uncertain, so he thrives on talking and learning about concrete things. Geography, history, time, birth dates, ages, schedules, events...these are all things he talks about CONSTANTLY. At one point during the appointment today Dr. M looked at Elijah and said, "I love your tie!" (He wore his Easter tie to the visit.) Without missing a beat, E replied, "Thank you! I love yours, too!" Dr. M made a comment that even though that is probably a learned thing, it is a great sign that Elijah is able to reply in such a way that makes people want to engage with him. A step in the right direction and a tiny sign that our efforts are making a difference.

We also chatted about potty. His thoughts were encouraging. Bottom line: be patient. Eventually E will be able to move this up on his list of priorities.

Dr. M recommended that if E has trouble in school again this year, we should consider putting him on an SSRI to take the edge off his anxiety. In the meantime, we will just keep doing our best! Early bed times, mapping out our weeks on the white board, getting him sufficient sunlight, disciplining consistently and LOVING him so he feels secure and safe.

Tomorrow we have post-surgery follow-up with ENT and our first appointment with Fraser (super hopeful/excited about this one). Elijah and Sammy get to spend an entire day on Saturday with their awesome Grammie and Gramps while Dan and I work. They are so excited!

Thanks for checking in!! Have a great week!

Just one of those days.

Oye, today was rough. Elijah had a "bad" day at school, which wasn't super surprising. Last night before midnight I heard him repeatedly kicking the wall next to his bed. I opened his bedroom door. He looked up at me and said, "HI, MOM!" I'm pretty sure he went back to sleep, but he was up again ridiculously early and he looked like he had been tortured when we got him out of bed this morning. Right away, I put calls into his sleep specialist and his developmental ped regarding his sleep meds. His sleep doctor is notorious for not getting back to me for literally WEEKS, hence the reason for the back-up call with the ped. He had mentioned to us that he was very familiar with the med Elijah is taking, so it's always good to have two experts on top of things.

I received a call back from the developmental ped's nurse almost immediately. Impressive! Isn't it funny how doctors operate so differently? The nurse had spoken with Dr. M regarding my concerns about Elijah and his response was: the med he is taking does NOT interrupt sleep. If his sleep is being disturbed beyond the norm, it is not due to the medication. In fact, he suggested upping the dose by just a tiny bit. We did that tonight, but won't know its effect for a week or so.

I was expecting a call from the neuropsychologist today, but it never came. We were supposed to discuss E's options at school and I also have a small list of other questions for him. Do we continue to discipline Elijah in the same way? Could he potentially have a semi-visual view of the world around him? What are the accommodations we need to advocate for to have in his classroom next year?

Everything seemed off the charts today...emotions, behavior, feeling overwhelmed and anxious.. Praying for a much better Tuesday and PEACE!

Also wishing you all a wonderful week! Thanks for peeking in. xo

Answers and questions and answers and questions.

We had Elijah's appointment with Dr. M today, his new developmental pediatrician. It was a positive visit. Dr. M is an incredibly smart doctor, a compassionate individual and he really truly listened to us as we explained Elijah in-depth. We talked for an hour and a half! Wow! There was no rushing at all, just a totally relaxed visit where we felt our words were valued, heard and completely understood. Perhaps more than they ever have been before by any other human being.

Once he had a good grasp on Elijah, he drew the below diagram. He explained that Tic Disorder (or Tourette's), ADD and OCD/anxiety, when combined, can mimic autism (the shaded area). This is EXACTLY what Elijah's neurologist recently said to us, almost word for word. Super interesting. So again, Elijah doesn't fall into any one category. He has tendencies toward about every single category, though!

And this doesn't really help him at all in school. He is currently receiving special education services under the Deaf and Hard of Hearing label, which is great and necessary. But the central focus is not directed toward what he really needs help with--social skills, attention and anxiety. It's a tricky situation. There are many pieces to this puzzle and there is no ONE answer, as we have known for so long. For whatever "reason," Elijah has bits and pieces of all of the following: Tic Disorder, anxiety, OCD, ADD or ADHD and autism. That's not to mention his hearing challenges and the frustrations that must go along with that. And then there is the sleeping difficulties, which magnify all of the above and which also may or may not be a result or any or all of the above!

Notice part of the word I jotted in the corner of this diagram. I wrote "diminished" because that is a word Dr. M used to describe our situation with E's schooling. When Elijah is not understood by his educators, his whole medical history and everything he has been through becomes diminished. That is exactly how I've felt this year and I've been unable to verbalize that. There are expectations of him that are very black and white, and he just is not black and white and cannot be treated as such.

Another note I wrote down from the visit was Periventricular Leukomalacia, or PVL. Dr. M explained to us that sometimes children born with congenital heart defects also are born with PVL, which is basically a brain injury that affects motor control and other developmental delays. It's a little bit difficult for me to read about it, although it would explain a lot. I can't believe I have never heard this until now. If Elijah does have PVL, it means that damage to some pathways in his brain was done at birth, or even before, due to either lack of oxygen or bad circulation. This is something we will explore.

What do we do now? Dr. M feels that we need to address some important things at school. I personally feel like we just need to get through the rest of first grade and move on from there. It might be a good idea to get him into a social skills group somewhere to work on the anxiety he deals with with his peers. Also, Dr. M feels we need to do deeper psychological testing. Possibly at school, but definitely with a neuropsychologist. I called the neuro-psych and of course they need loads of paperwork, both from us and school, before they can schedule an appointment, which won't be until at least May. More waiting. I feel slightly impatient, but mostly like we continue to figure more and more out about Elijah. I must sound like a broken record, but we are getting there. And Dr. M did have a few medication recommendations that he thought would be a good fit. He obviously wants to run them by E's sleep specialist/cardiologist first. These meds would hopefully get to the root of E's issues instead of just causing him to feel sleepy, if that makes sense. Let's take care of the anxiety and OCD and maybe then he will be able to sleep better. We obviously don't want him on meds long-term, but getting him through first grade without any further major drama is a big goal.

I was super impressed with Dr. M. He knew every detail about everything that we as Elijah's parents are feeling and dealing with. He was able to fully understand what a complicated "case" E is. There is no way to explain how good it feels to feel completely understood like that. And not just that, but to be given huge unspoken high-fives about what a good job ALL of us have done to get to this point, despite the challenges and struggles and frustrations. Elijah's list of AMAZING doctors continues to grow! He has the best people caring for him and I mean that with my whole heart. We are very blessed and thankful!

That's all for now, ha! If you made it through this entire post, you get an extra pat on the back. :) Thanks for reading! Praying you all have a great rest of your week.

A peek back through the years!

We received a GOOD phone call today! I love good phone calls. There was a cancellation at the developmental pediatrician's office, so we have been moved up to TUESDAY (as opposed to the end of April)! I was so excited that I'm pretty sure I squealed on the phone. I have felt like this doctor is going to really be able to help our boy in a big way, so I am very very excited about the appointment.

We have also just starting bringing Elijah to see a chiropractor. I attended the meeting tonight where we discussed the state of his spine. Yikes! I figured his poor spine has endured a lot, but tonight I learned that the degree of his S-curve is that of a 79-year-old man. :( I'm not even going to add this to my worry list. 

I thought it would be fun tonight to take a look back through the years! Here are some photos from the month of March in years past.

March 2014. Our awesome boys today.

March 2013. Silly guys!

March 2012. Aww, they look so small and cute.

March 2011. I LOVE both of these photos so much.

March 2010. I was on never-ending bed rest with Sammy during this time.

March 2009. I love this happy ski-goggled face.

March 2008. A month before the biggest surgery of Elijah's little life. You'd never know how sick he was here given his huge, happy smile!

March 2007. New babe with fuzzy hair!

Here's hoping you all have a great weekend! As always, thanks for peeking in.